Background
Recurrent Respiratory Papillomatosis (RRP) is a chronic condition characterised by the growth of papillomas in the airway which may cause breathing difficulties and vocal changes. Patients often undergo repeated surgeries and adjuvant therapies to control the effects.
Whilst treatment options are well researched, there is limited understanding of the broader impact, which may be explored through the parental perspective.
Methods
A qualitative study was conducted, using a semi-structured narrative interview with parents of children with RRP. Interviews were recorded, transcribed and thematically analysed. Background characteristics were collected to contextualise findings.
Results
Five parents of four children were interviewed: three individually and two jointly. The children had a mean of 8.75 years since diagnosis, and averaged treatments biannually.
Analysis revealed five overarching themes: Medical Concerns, Parental Experiences, Direct Impact on the Child, Challenges, and Support Systems; with 13 subthemes.
Parents described balancing their emotional responses with remaining strong for their children; educational disruptions due to treatments; and concerns for the future. Experiences commonly focused on vocal changes; the long-term impact on education, and admiration for their child’s resilience. Disease severity impacted experiences, with more frequent interventions linked to greater disruption on careers, family life and education.
Conclusion
Though the rarity of RRP limited the participant pool, this study highlights RRP’s impact beyond physical symptoms, into educational, emotional and social domains. Overlapping themes reflect the multifaceted effect, underscoring the need for holistic support strategies to mitigate the broader burden.